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"I found out I had HIV when I was pregnant for the first time, in 2009. In Kyrgyzstan, all women are tested during pregnancy twice, once early on and once later in the pregnancy. They say it is your choice whether to get tested, but if you don't then you cannot get maternity services. The result was a shock but I wanted to have my child.

My medical card has a code on it which shows that I have HIV to anyone who knows the codes... as soon as people in the hospital saw that code, they didn't want to help me

I sat down with my own maternity doctor and with the AIDS Centre and made a plan with them about the delivery and how it would be managed, because there is a lot of stigma associated with HIV in Kyrgyzstan. So, my doctor understood the issues. But when I started to give birth, my doctor was not available. So that meant I had to go to the maternity hospital and be seen by whoever was there. My medical card has a code on it which shows that I have HIV to anyone who knows the codes. There was no question about whether I disclosed my status – it was already there, on my medical card. And as soon as people in the hospital saw that code, they didn't want to help me. They started to find all kinds of reasons for rejecting me, for not being able to help with the delivery, but it was only because they were afraid of my HIV. Even the management of the hospital didn't want to accept me.

When people came to help with the birth, they were dressed up with gloves and suits and masks like spacemen

Eventually, I managed to contact the Head of the AIDS Centre and they intervened with the Head of the hospital to let me stay there, because I was about to give birth. But even then and despite their intervention, I was put in an isolation room. When people came to help with the birth, they were dressed up with gloves and suits and masks like spacemen. They were obviously very reluctant to touch me or even the baby. They left us in isolation the whole time I was there recovering, even when the baby was crying. It was awful. Afterwards I went back to that hospital with people from the AIDS Centre. We did some training with them and I talked about my experience and why it was wrong. It was very successful and it has led to further training sessions in other maternity hospitals, so I hope that some good has come of it. But I know, from later experiences and from other women, that there is still a long way to go to get rid of stigma in our maternity system.

They left us in isolation the whole time I was there recovering, even when the baby was crying. It was awful

"

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EATG » STEPS – HIV Cure Community Workshop in Glasgow – Final Report now out

STEPS – HIV Cure Community Workshop in Glasgow – Final Report now out

15/12/2016

On the 22nd of October, in Glasgow, the European AIDS Treatment Groups held the third edition of Steps – a community initiative to design the pathway to a long-term remission of HIV infection. This is a workshop, organised each year the day before the opening of the major European HIV conferences EACS and HIV Therapy Congress, to facilitate a comprehensive and thorough discussion on the latest advances in HIV cure research among the European community of people living with HIV. The first workshop was organised in Glasgow two years ago and was very well participated by about 20 people: it featured presentation about the immune system mechanisms of action by Giulia Marchetti, University of Milan, and about treatment interruption by Cristina Mussini, Policlinico of Modena.

This here in Glasgow the third Steps workshop agenda was focused on treatment interruptions: given that stopping antiretroviral treatment is, at this moment, the only way to assess if a cure strategy is working, how can they be used safely? Are there any alternative biomarker or predictor that could inform scientists on the outcomes of a cure strategy? What are the feelings of people living with HIV towards this kind of interventions?

These questions were all addressed during the workshop: Giulio Maria Corbelli, ECAB chair, introduced the meeting discussing with the audience which measures should be adopted in cure clinical trials design in order to safeguard participants safety when undergoing treatment interruption. The discussion was based on a living document drafted by Simon Collins, Richard Jefferys and David Evans (http://i-base.info/htb/wp-content/uploads/2014/07/Community-TI-draft-for-comment-210714.pdf) containing the main recommendations about inclusion and exclusion criteria, interruptions duration, and guiding factors when managing the interruptions.

Alexander Pasternak, from the University of Amsterdam, explained their work in finding a reliable and easy-to-use tool to measure the size of HIV reservoir. This is a measure that could be very important in identifying those participants who are more likely to experience a successful outcome from cure strategies and that could help in reducing the need for treatment interruptions in cure research trials. Melanie Stecher from University Hospital of Cologne presented their systematic review of treatment interruption studies in the last 20 years: this showed how significantly safer treatment interruption can be when viral load monitoring is very frequent. Stefano Vella from National Institute of Health in Rome, illustrated the EHVA project (European HIV Vaccine Alliance – www.ehv-a.eu) which includes a therapeutic vaccination trial with treatment interruptions to be launched in 2017 in several European countries.

The workshop gave the opportunity to the participants to ask questions and discuss worries and hopes with presenters and among themselves and confirmed how much the European community of people living with HIV needs this kind of opportunities.

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